Written by

Nancy De Gennaro

The Daily News Journal

Autism 24/7: birthday: 3/7/13, 2:01 PM

Online

Next month’s installment will focus on health and autism. Some people with autism have digestive issues while others have no control over hunger or will only eat certain foods. How do schools and caretakers ensure diets are followed? How do parents deal with issues to keep their children healthy? Look for the story April 21 in The Daily News Journal and on dnj.com.

Denise White works with her son, Levi, on his new iPad mini he received for his birthday. An app helps him communicate what he wants because he can't talk. / John A. Gillis/DNJ

“Carr, you can’t do that. You don’t know who might be at the door. We’ve talked about that,” says his mother, Felicia Burk, sliding up behind him.

The preteen stomps off, plops onto the living room couch, buries his head in his hands and starts to wail.

Felicia Burk slowly walks over and sits beside him and lays her hand gently on his back.

“When you see someone you don’t know, you have to wait a minute and then say, ‘Hi,’ because it could be dangerous. OK? Are you allowed to open the door? Carr, look at me. You’re not in trouble,” Burk says, slowly repeating herself, almost in a monotone, over and over.

Carr, who has autism, cries nonstop for 10 minutes or more before his sobs subside. His 15-year-old brother, Heith, sits across the room and offers words of encouragement.

Fight for rights

Three of Burk’s children have autism spectrum disorders and a long list of special needs. All three need round-the-clock care. All have sleep-disorder issues, which leaves Burk sleepless many nights. Her energy is drained and stress has brought on a host of health issues. She needs help and she has to fight for it.

Mounds of white paper cover almost every surface of Burk’s home office. Her email inbox is just as full.

“This is Carr’s, Heith’s pile, this is Heith’s, this is Scarlet’s, this is the Office of Civil Rights complaints and these are complaints from ...” Burk says, pointing to different stacks as she trails off. A verbal commotion in the adjacent living room distracts her.

Paperwork — both virtual and tangible paper trails — are necessary to get and maintain services for her three adopted children.

“Trying to obtain services for a special-needs child is a never-ending process. ... Taking care of the children is much simpler than taking care of the paperwork,” says Burk, placing her hand on a stack of papers to keep it from teetering off the edge of the desk. “It’s very frustrating.”

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Where to begin

The autism diagnosis alone can be overwhelming, says Holly Thornhill of Murfreesboro, Autism Speaks advocate and mother to Hunter, who has autism.

Knowing where to start can seem like an insurmountable task, she notes.

“The first thing you have to do is accept it. Being in denial will hinder a child. Swallow your pride and say, ‘We gotta deal with this,’” says Thornhill.

Thornhill suggests downloading the Autism Speaks 100 day kit. “It gives you peace of mind and tells you what step you need to take next,” Thornhill says. “You also need to get an IEP (Individual Education Plan) set up and you need to get involved with therapists to find whatever therapists your child is needing and get that therapy set up,” she adds.

The young mother started early. As a nursing student, she knew her son had developmental delays early on. So she contacted Tennessee Early Intervention Services (TEIS). “He was already getting therapy, although we didn’t have a diagnosis,” she says.

Denise White of Smyrna, also a nurse, pushed to get both her boys help early. Her 13-year-old son, Levi, and 9-year-old son, James, both have autism spectrum disorders. James struggles mainly with social issues while Levi is nonverbal. Both boys are on TennCare, the state’s Medicaid system, because they receive Supplemental Security Income. The boys receive medical and dental coverage and are also cover under their mother’s health insurance.

The only way White knew to apply for SSI at all is because the director of the special-needs daycare Levi attended suggested she do so.

“I showed proof of their disability back when they were 2. I had to show documentation from doctors, from their teachers and from other people who knew them, just about every single piece of paper I had on them,” says White, a single mother of three, including teenage Marian, who is not on the spectrum. “It was mainly to get them services they need, not just now, but when they are adults.”

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Through TennCare, Levi receives speech and occupational therapies, and James has speech. Primary insurance doesn’t cover those therapies, she notes.

SSI is granted based on need and income. In order to continue to get SSI for both her boys, White must keep her financial life an open book to the government.

“I have to turn in my paycheck stub every month. They call me every year to ask me questions. They know everything about my life,” White says, chuckling.

Every bit of SSI for her boys goes to their care, including the money it takes to ferry them to frequent medical appointments.

“When you have a baby, you expect the expense of having the baby and raising a child, you plan on them being in diapers so long, but you don’t expect to think about having a special-needs child and running to therapy four or five times a week.

“I work night shift so I can do all that. I don’t know what people do that work the day shift. I don’t know how they do it. I do it all myself.”

Support

Although Thornhill is a single mom, she’s able to work around her son’s therapies and doctor visits. Her mother, Pat Galland, is also a big help. “I don’t know what I’d do without her,” she says.

Like other parents, Thornhill attended Murfreesboro’s Autism Support Group, which meets at 6:30 p.m. the second Monday each month (except December) in the Eduction Building of First Baptist Church on East Main Street. But instead of a support group, Thornhill has thrown herself into Walk Now for Autism Speaks in Tennessee and other benefits for Autism Speaks.

The rest of the time, the young single mom stays busy working as a home health nurse. Her career allows her to have a flexible schedule in order to take her son to therapies and doctor appointments. In Thornhill’s situation, she has to work. But many of her friends who have a two-parent household, one stays home. “And that makes it harder because the therapies are so expensive,” she says.

Insurance reform, now, please

Jennifer Sheridan, Autism Speaks volunteer advocate and mom to a son with autism, says many families accumulate major debt paying for services to help their child with autism.

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Under state laws, insurance companies don’t pay for the majority of services used to treat autism, Sheridan says. She’s spent the last year growing support for the reform across the state.

At 3 p.m. Wednesday, Senate Bill 1286 and House Bill 1265 are on the agenda for review by the Insurance and Banking Subcommittee at the Tennessee Legislature, which is now in session. The bills were up for review this past Wednesday, but the committee hearing was postponed for a week.

Sponsored by Sen. Jim Tracy and state Rep. Kevin Brooks, the bills “would require insurance companies to cover a wide range of autism therapies that as of right now are routinely denied,” explains Sheridan. Her autistic son, Charlie, has fueled her passion for helping other families in the autism community. Similar legislation passed in 32 other states, including Kentucky and Arkansas.

Concrete data from the Missouri Department of Insurance, Financial Institutions and Professional Registration reports the insurance reform for autism services costs 25 cents per member, per month. Sheridan says lobbyists for the insurance companies in Tennessee show a projected cost of $4 per member, per month.

“Actual costs from around the country show us that the average impact on premiums is 31 cents, per plan member, per month,” Sheridan notes. “We are trying to fight back. We have the legislation in 32 states. We don’t need projections; we have real-life costs. We know exactly (what the insurance reform will cost). But the insurance lobbyists are saying they don’t believe us. What’s not to believe? It’s math. Here’s the phone, go call Missouri.”

Coverage: Why not all?

Burk’s children get health coverage under TennCare. Through the Department of Intellectual and Developmental Disabilities, Heith and Scarlet are covered under a Medicaid waiver. Medicaid provides a free or low-cost health coverage to children, families, pregnant women and people with disabilities. But there is a low-income status requirement.

In Sheridan’s case, her son isn’t eligible for TennCare because the family’s income is too high to qualify.

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“Social Security disability is an option for some and you can also get TennCare through them if you qualify, and the income ceilings are higher. But not much,” Sheridan says.

The Medicaid waiver is a way states can use Medicaid dollars for services for people with intellectual disabilities. The waiver allows the state to pay for services which are provided in the community instead of in an institution. TennCare is the state’s Medicaid program.

“However, DIDD cut the services which were in place and have made it more difficult for Heith to function in the home,” Burk says. In recent weeks, Heith’s medication went off kilter and he launched a violent attack on his mother.

Caring for her children is a full-time, 24-hours-a-day job, she says.

“Heith and Carr have hearings that relate to residential services because without the level of support they need, it’s difficult to remain at home. They both need one-on-one attention, well, really, two-on-one attention,” Burk says, her two boys bantering back and forth in the background.

“I love you,” interjects Carr. “I love you, too,” Burk says, barely taking a breath as she continues her explanation. “Youth Villages came and assessed (Heith) during his crisis, but I’m told that you have to give up guardianship in order to get the residential treatment.”

“Heith and Scarlet would get a multitude of services if I allowed them to move from my home. ... I am very angry. ... They would provide the services to our neighbor if Heith and Scarlet lived with our neighbor. But they won’t provide it in a birth home or an adoptive home,” Burk says. “That’s why you hear a lot of people’s children are in foster care versus being adopted. If you adopt a child with special needs, you will not be able to get the services they need. But if you become legal guardian, you can provide the services.”

Burk won’t accept that, so she continues to fight for her adopted children’s rights to services.

“I believe all children deserve a family. I love my children. I’m not trying to get services so they can live somewhere else,” Burk says.

Although the Burk children do get a lot of services through DIDD, not everything is covered.

“As far as autism therapies, the most important therapy for most autistic people is Applied Behavior Analysis therapy, and you can’t get that at all without an autism diagnosis,” Sheridan says.

In some cases, TennCare recipients have received ABA therapy, including Burk’s children. But it’s a fight to get it, Burk says. Often, she refers people to the Tennessee Justice Center for assistance in getting services. She’s also open to helping anyone who needs advice.

Evidence-based therapies such as ABA, Sheridan says, are the “best shot” for children with autism to grow up and lead independent lives and become taxpayers.

“I tell people behavior therapy can mean the difference between becoming self sufficient or not. It can make a difference between being a bagger at a grocery store or being a manager. We’re trying to give our kids the best chance to become independent citizens,” Sheridan says.